Whenever the rainbow appears in the clouds, I will see it and remember the everlasting covenant between God and all living creatures of every kind on the earth." Genesis 9:13

Thursday, September 24, 2015

Current status

I haven't updated here in a long time and while I still intend to take this down the depression has to go first. So here's the story for now. Yes, I am still severely depressed. The hospital got my meds back to where they were when this episode started. It wasn't enough. After some confusion with Dr. Brain last week I saw her Monday. We have a complicated plan.

She contacted my inpatient dr. to see if I am a good candidate for ECT (shock therapy). I am rather hoping this is possible because it is something new and not medications. But there is still trickiness; we have to have some med to go on when the treatments are done that will hold me and keep me from just winding up back in the hospital for more ECT.

For right now we increased Emsam to the absolute highest dose. So now I'm on a strict MAOI diet which is weird after being able to be fairly lax with it for years. I'll know if that is helping in about a week, so about Monday. So far I've slept all day the last 2 days since increasing it. I don't think it's related.

There are 2 new anti-psychotics on the market and Dr. Brain is checking into whether one of them might be helpful. One of them I discovered last night has a high risk for the same problems I just got over so it's probably out. The other is a derivative of Abilify which I had problems with when I was on it years ago. So she has to figure out if the same risks exist for it. Getting off Seroquel is one plan because it doesn't seem to be as effective as it once was.

If all that fails then I will go in the hospital and come off Seroquel and go on the last resort medication, Clozaril. It's a big deal to go on that one; every week for 52 weeks blood has to be drawn and you get 7 days worth of medication after the labs are checked. So it's a big commitment just for that and some of the side effects can be scary beyond the one requiring the blood draws (which is that your immune system can tank and you can get really sick if not monitored). I am terrified of this drug but I'm also terrified of what it will do to me to keep trying and failing meds. That makes me feel so very hopeless.

So I'm not sure what else is going on. Dr. Brain thought she'd know about ECT yesterday to tell me but I didn't get an answer. So either the hospital dr. didn't answer her or she ran out of time because today was Yom Kippur and she'd be off work for that. I'm not even clear whether we'd go for ECT now or at what point in that plan we'd try that. I know she wants to avoid the side effects (memory loss) if we can treat this otherwise but it's no secret that there aren't a lot of options remaining.

So the status right now is increased Emsam and something else will happen soon.Which is a lot better than waiting to see if my body would stabilize itself after the hospital made a lot of changes really quickly. It did not. I understand why we had to do that but oh the wait was awful.

9 months of this. I don't even remember feeling good anymore. And now I need to go change my patches and set my alarm to see Dr. Mind tomorrow. Because I will forget and then everything blows up.

5 comments:

Jen, you amaze me as you navigate all these stormy waters. I am so proud of your fortitude and faith as you keep pushing through.

May God bless you in a very special way today and give you some light on this challenging path.

Lots of love and comfort, M

2 Corinthians 1:3-4 (WEB)

Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort;who comforts us in all our affliction, that we may be able to comfort those who are in any affliction,through the comfort with which we ourselves are comforted by God.

People sometimes do maintenance ECT to prevent relapse. I was also told that the best drugs to prevent relapse are nortriptyline and lithium. Of course nortriptyline hadn't worked for me in the past but they seemed to think it would work after ECT. It didn't. But it might for you.

Are you in a day program? Sometimes just the structure can be helpful, even if it is otherwise pretty useless. And some have good programs like DBT.

Maintenance ECT would be decided by the hospital dr. First they have to say they feel it will or will not help, which probably happened but I didn't hear from Dr Brain. If I do it I'll be admitted and go through 3-4 weeks of treatments and then usually some OP follow-ups. We are hoping that I'll be able to do that part closer to home. And if maintenance is offered I'll do it; I've seen someone with amazing results doing that.

We tried for an IOP but I'd have to pay 20% of the total cost (up to my medicaid spenddown which is a lot of money each month) and that just is impossible. Medicare is still not set up for mental health. It's too bad; it would be a good thing right now but not if it puts me so far into debt that I don't have money for food. So instead we just are trying to fill gaps with what we can do--extra time with Dr. Mind, starting a support group soon (this week probably).

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About Me

Over the years I have noticed that when I have the least hope a rainbow appears. Rainbows are a wonderful combination of beauty, hope, happiness and rain, the product of ugly grey clouds that hide the beauty of the sky. The beauty that is a rainbow can only come with the presence of both rain and sun. Such is life with bipolar disorder. There are good times, there are tough times, and there are rainbows to remind us that beauty will return, sometimes fleetingly and sometimes for a long time. This blog is my story of sadness and hope. Please scroll down to "Who I Am" under Pages to read more about me and the people who populate this blog.

In Case

Please note that any patient experiences noted in this blog are heavily edited to disguise events. Similarities to real persons are coincidental.

Please also know that while I speak as a professional at times, I am not a doctor. I have strong opinions, some based on professional training and/or experience, some based on research, and some based on personal experience of my own variety of this illness. Therefore what I say is my opinion, not a fact and doctors should always be consulted.